Go for that transplant!

[sandman]

Sorry goofynina.  Your friend can still donate a kidney to you if he/she wishes but your friend needs to make a very real and informed decision.  A decision I to can relate to as well.  The only advice I can offer your friend is to do his/her homework.  I know I have already and it's a very hard decision to make.

But for me, I would do just about anything for Angie, even donate one of my kidneys to her if she needed a kidney fast.  Knowing full well, even a completely successful transplant has a expectancy of 5 to 15 years.  That would mean that she "could" have at least more 5 years off the dreaded dialysis machine.  Even that amount of time could make a world of difference.

[Epoman]

I'm sorry but "Transplants work and they work very well." is a lie, the statement should read "Transplants work sometimes and they can work very well if you are lucky" A transplant is a Crap-Shoot. I have seen to many people DIE from complications of a transplant, or have their new kidney work a week then reject.

Actually most transplants work out very well.  Graft rate at one year on average is 96%.  That is pretty good considering 1 year survival rate of a dialysis patient ranges from 72-78% depending on medical conditions.

Myself I have seen far more people die on dialysis than have from complications of a transplant.

My transplant lasted 12 years and only had an episode of rejection once and that was in the beginning. 

Each person is different and needs to do what is right for them.   That is to weigh the risks and benefits of both.  A transplant may be a crap-shoot but so is dialysis.

Its all about which one you feel better rolling the dice on.  Transplant or dialysis. ??

Actually statistics don't mean crap because they base that 1 year survival rate on EVERYBODY on dialysis. And the majority of patients are elderly. If statistics meant anything I should be dead practically, take a look at the survival rate of 10+ years of dialysis.   Its' scary. But it's true some people do very well with a transplant. And like I said before sometimes I think "what if I had a transplant?" but I can't live in the past. I just don't like the fact of having to re-start dialysis again one day, be off than having to start all over again. But for those of you who do decide to go for a transplant, Godspeed.  

Oh for all of you getting a kidney from a live donor, one of my nurses told me that one of her patients had a best friend offer her a kidney they got all worked up and as far as the operating room table, and at the very last minute the donor backed out.  She said they never told her how evasive the surgery was. So the moral of the story is make sure your donor is WELL-INFORMED, and knows everything about the process.

[livecam]

Very true about the emotional consequences but that is why both parties are carefully screened before living donation is allowed.  A donor has to be in perfect health with no history of a number of problems.  This was all discussed with us when I was first listed because UCLA was considering the first donor swap transplant and was trying to sell it to my wife and I.  She couldn't donate directly to me because we have incompatible blood types.  When a kidney is donated the donor does not go to 50% function.  One kidney provides 100% function with the kidneys often being described as the only organ that has a main and a spare.  The remaining kidney in a living donor does 100% duty.  When you look at kidney failure you'll notice they both fail at the same time because whatever the organic problem is in a particular case is affecting both equally.  There are some exceptions such as a kidney cancer on only one kidney but the general rule is that the status of both kidneys is the same. Now as far as predicting how long a person could go on one kidney I have one example. A guy I used to work with was born with a single kidney.  It has lasted his whole life so far with no problems. He retired two years ago.

[sandman]

When a kidney is donated the donor does not go to 50% function.  One kidney provides 100% function with the kidneys often being described as the only organ that has a main and a spare.  The remaining kidney in a living donor does 100% duty.

I have a hard time agreeing to that statement.  Your saying that a human being has two kidneys and that they are referred to as a main and spare?  Not to be the one to point out the obvious but the human body also has two lungs, two eyes, two ears, two arms, two legs and two halves to the brain.  Are they also described as being one main and one spare?  I don't think so.  Most people are born with two kidneys for a reason.

But most clinical studies have suggested that a person relieved of one kidney, the other remaining kidney could grow and take upto 75% of the total work load which would be acceptable tolerances.  But the reality is, your forcing the work load of two kidneys into one and there are no guaranties that one kidney will get the job done efficiently.

[Epoman]

Very true about the emotional consequences but that is why both parties are carefully screened before living donation is allowed.  A donor has to be in perfect health with no history of a number of problems.  This was all discussed with us when I was first listed because UCLA was considering the first donor swap transplant and was trying to sell it to my wife and I.  She couldn't donate directly to me because we have incompatible blood types.  When a kidney is donated the donor does not go to 50% function.  One kidney provides 100% function with the kidneys often being described as the only organ that has a main and a spare.  The remaining kidney in a living donor does 100% duty.  When you look at kidney failure you'll notice they both fail at the same time because whatever the organic problem is in a particular case is affecting both equally.  There are some exceptions such as a kidney cancer on only one kidney but the general rule is that the status of both kidneys is the same. Now as far as predicting how long a person could go on one kidney I have one example. A guy I used to work with was born with a single kidney.  It has lasted his whole life so far with no problems. He retired two years ago.

I read and have been told that the donors remaining kidney actually starts working harder, enlarges a little and actually does the work equivalent to Approx. 75% function of two kidneys, but as we all know one kidney is more than enough to sustain life. And even if it was just 50% it would still be adequate to support life, IN FACT even if a person just has 10%-15% kidney function they may not need dialysis. I don't think I have ever read where our 2nd kidney is a spare.  I'm sorry to contradict another one of your posts but I don't like people hearing the wrong information. You are forgeting one complication of a donor, they are at a higher risk now for high blood pressure, it's a small risk but it still is a risk.

[angieskidney]

wow I miss so much by going to dialysis! Don't I?

You guys should read the news articles in D&T City's Live Donor Section lol.


Anyway, I had a transplant and it was great! It lasted 11 years where 9 of them I was able to work at a 12-hr shift job where I climbed the ladder! I could never have done that on dialysis! This is true. But when I was finally approved for the promotion I worked so hard for I had to face the fact that reality would catch up to me and bite me in the ass! I realized that health is wealth! Not the other way around! It may suck but you can't run from reality! I have now been back on dialysis for 5 years. I chose PD yet here I am on HD. You can't always choose what you want.

I consider myself luck when I see other patients in my dialysis unit who have broken hips, lost toes or their whole foot, or who have lost their eyesight. Sure a lot of that is due to diabetes but still .. I am lucky.

Now my mom wanted to give me her kidney. She was 100% compatible. Same blood type. Matched tissue typing. All that jazz! Yes .. it turns out that if she did .. then down the road she would be on dialysis too. She needs both her kidneys. My dad can't give me one because he has a rare arthritic disease called Stills and my one brother has very bad teeth (diseased). My other brother is scared and my one brother with the bad teeth thinks the other brother should give me a kidney. I told him that I would never EVER push the other brother to give me a kidney because it has to be his own choice and he is still young (both my brothers are under 30, both younger than I am). I don't want to screw his future.

Yes you might not like that "body parts" show but I wish I could have seen it. I am one of the admins on the site Dialysis & Transplant City where they have talked a LOT about live organ donation and through them I have learned a lot!

No, I am not against live donations but realize that "body parts" is ONE show and there are 10 times that in the media going on and on about how people should donate kidneys before their death or else they are selfish. That is not right neither.

There are 2 very strong sides here but a smart person has to look at BOTH sides and get ALL the info before they can make a very informed decision without any regrets!

I am glad my mom could NOT give me her kidney and as she liked to say "give a second birth to me, a 2nd chance at life" ... The reason I am glad? Because she would have blamed me when it failed. And I would have felt that I failed her. I would not have liked to have that extra guilt on me. "take your pills! Eat well! Drink 2-3Liters per day to flush that new kidney out!"  I am glad to just wait for a kidney that no one will miss. That suits me just fine.

But yes, I definitely want a kidney again! I loved living like a healthy person, even if ONLY for 5 - 15 years. I just hope I would not be one of those people who have the transplant only to be told it never took or that my body never accepted it or that my body rejected it right away and they couldn't make my body accept it.

I hope for the best and I hope for the best for all of you!

But in regards to life-donors... just be informed before you make such a serious decision! Thanks.

[coravh]

 

I posted this thread a while back:
http://ihatedialysis.com/forum/index.php?topic=794.0

It's about a show CNN did on live organ donation.
The main issue at this stage and what really concerns me is that there seems little to no follow up of the donors, and no real long term studies. Now that is from the United States point of view.
I'm not sure how much it differs here where I live in France, or for other countries around the world.

I know that my transplant center does a lot of follow up (Fairview Univ. Med. Ctr in Minneapolis). In their donor package (among other things) is a study relating to women donors and the effects donation has on their ability to get pregnant. The study had I believe about 800 female donors and there was no difference in any significant way vis a vis ability to get pregnant, rate of miscarriage, rate of twins, birth defects, etc.

My cousin is contacted every year to see exactly how she is doing and they  have specific lab work for her to do.

Cora

[angieskidney]

I know that my transplant center does a lot of follow up (Fairview Univ. Med. Ctr in Minneapolis). In their donor package (among other things) is a study relating to women donors and the effects donation has on their ability to get pregnant. The study had I believe about 800 female donors and there was no difference in any significant way vis a vis ability to get pregnant, rate of miscarriage, rate of twins, birth defects, etc.

My cousin is contacted every year to see exactly how she is doing and they  have specific lab work for her to do.

Cora

Wow is their study on the web anywhere? I would LOVE to post it on D&T City!

[sandman]

I know that my transplant center does a lot of follow up (Fairview Univ. Med. Ctr in Minneapolis). In their donor package (among other things) is a study relating to women donors and the effects donation has on their ability to get pregnant. The study had I believe about 800 female donors and there was no difference in any significant way vis a vis ability to get pregnant, rate of miscarriage, rate of twins, birth defects, etc.

My cousin is contacted every year to see exactly how she is doing and they  have specific lab work for her to do.

Cora

Wow is their study on the web anywhere? I would LOVE to post it on D&T City!

Man!  I would just love to read it.

[BigSky]

Actually statistics don't mean crap because they base that 1 year survival rate on EVERYBODY on dialysis. And the majority of patients are elderly. If statistics meant anything I should be dead practically, take a look at the survival rate of 10+ years of dialysis. 

Granted that is true to some degree. Statsistics are not everything.   Removing the elderly from the equation ,the death rate is still higher for dialysis patients over transplant patients at 1 year.   The standard that use to define elderly was those at least 65.  By most accounts no one sees 65 as elderly anymore.  However using the age of 65 as elderly the majority of patients are not elderly.  In fact average age of a dialysis patient is 60. 

I read and have been told that the donors remaining kidney actually starts working harder, enlarges a little and actually does the work equivalent to Approx. 75% function of two kidneys, but as we all know one kidney is more than enough to sustain life. And even if it was just 50% it would still be adequate to support life, IN FACT even if a person just has 10%-15% kidney function they may not need dialysis. I don't think I have ever read where our 2nd kidney is a spare.  I'm sorry to contradict another one of your posts but I don't like people hearing the wrong information. You are forgeting one complication of a donor, they are at a higher risk now for high blood pressure, it's a small risk but it still is a risk.

I have a hard time agreeing to that statement.  Your saying that a human being has two kidneys and that they are referred to as a main and spare?  Not to be the one to point out the obvious but the human body also has two lungs, two eyes, two ears, two arms, two legs and two halves to the brain.  Are they also described as being one main and one spare?  I don't think so.  Most people are born with two kidneys for a reason.

But most clinical studies have suggested that a person relieved of one kidney, the other remaining kidney could grow and take Upton 75% of the total work load which would be acceptable tolerances.  But the reality is, your forcing the work load of two kidneys into one and there are no guaranties that one kidney will get the job done efficiently.

Just thought I would add something.

Don't know if this will make sense.

The only thing that has changed is the total working capacity of the kidney.  A person with two kidneys has 100% max capacity, donating one will give them 50% max capacity but they will still retain 100% of the kidney function they had before donating and labs will remain virtually unchanged. The kidney does grow to take on more working capacity.  (As does the transplanted kidney grow.)  Also as to forcing the load of two kidneys on one it really doesn't work that way.  Kidneys process 24 hours a day nonstop and only process so fast unless toxins are out of control. They rarely ever run at max capacity.   Only when toxins are out of control will they go into overdrive.  I am sure most transplant patients know what I am talking about because most have seen this affect after a transplant where the kidney is in overdrive producing urine.

Indeed the kidney is  the one organ seen as having a spare.  It is seen this way because there are not considered to be any ill affects from losing a kidney.  Whereas you lose an arm or any other bodypart mentioned there is an affect.  In fact I may even have some of the literature that described it such.  Will try to dig through and find it sometime.   When my mom was tested to be donor we were told this by the doctors numerous times.  She never was able to donate though because she only had 98% kidney function.  Granted there are no guarantees but there are none in life.  However the doctors make sure that any risk to the donor is as small as possible and they reject candidates if they think they have something that could lead to problems down the road.  There is always a risk because nothing is perfect.

[Epoman]

Actually statistics don't mean crap because they base that 1 year survival rate on EVERYBODY on dialysis. And the majority of patients are elderly. If statistics meant anything I should be dead practically, take a look at the survival rate of 10+ years of dialysis. 

Granted that is true to some degree. Statsistics are not everything.   Removing the elderly from the equation ,the death rate is still higher for dialysis patients over transplant patients at 1 year.   The standard that use to define elderly was those at least 65.  By most accounts no one sees 65 as elderly anymore.  However using the age of 65 as elderly the majority of patients are not elderly.  In fact average age of a dialysis patient is 60. 

I read and have been told that the donors remaining kidney actually starts working harder, enlarges a little and actually does the work equivalent to Approx. 75% function of two kidneys, but as we all know one kidney is more than enough to sustain life. And even if it was just 50% it would still be adequate to support life, IN FACT even if a person just has 10%-15% kidney function they may not need dialysis. I don't think I have ever read where our 2nd kidney is a spare.  I'm sorry to contradict another one of your posts but I don't like people hearing the wrong information. You are forgeting one complication of a donor, they are at a higher risk now for high blood pressure, it's a small risk but it still is a risk.

I have a hard time agreeing to that statement.  Your saying that a human being has two kidneys and that they are referred to as a main and spare?  Not to be the one to point out the obvious but the human body also has two lungs, two eyes, two ears, two arms, two legs and two halves to the brain.  Are they also described as being one main and one spare?  I don't think so.  Most people are born with two kidneys for a reason.

But most clinical studies have suggested that a person relieved of one kidney, the other remaining kidney could grow and take Upton 75% of the total work load which would be acceptable tolerances.  But the reality is, your forcing the work load of two kidneys into one and there are no guaranties that one kidney will get the job done efficiently.

Just thought I would add something.

Don't know if this will make sense.

The only thing that has changed is the total working capacity of the kidney.  A person with two kidneys has 100% max capacity, donating one will give them 50% max capacity but they will still retain 100% of the kidney function they had before donating and labs will remain virtually unchanged. The kidney does grow to take on more working capacity.  (As does the transplanted kidney grow.)  Also as to forcing the load of two kidneys on one it really doesn't work that way.  Kidneys process 24 hours a day nonstop and only process so fast unless toxins are out of control. They rarely ever run at max capacity.   Only when toxins are out of control will they go into overdrive.  I am sure most transplant patients know what I am talking about because most have seen this affect after a transplant where the kidney is in overdrive producing urine.

Indeed the kidney is  the one organ seen as having a spare.  It is seen this way because there are not considered to be any ill affects from losing a kidney.  Whereas you lose an arm or any other bodypart mentioned there is an affect.  In fact I may even have some of the literature that described it such.  Will try to dig through and find it sometime.   When my mom was tested to be donor we were told this by the doctors numerous times.  She never was able to donate though because she only had 98% kidney function.  Granted there are no guarantees but there are none in life.  However the doctors make sure that any risk to the donor is as small as possible and they reject candidates if they think they have something that could lead to problems down the road.  There is always a risk because nothing is perfect.

Did I read that right? They would NOT allow your mother to donate because she only had 98% kidney function. That can't be right. A person doesn't even need dialysis until kidney function drops below 10-15%  Please give more details on how they came up with 98%

[Rerun]

I've been told that if you were a living donor and the kidney you have left fails, you jump to the top of the transplant list to receive a new kidney.

Is this true?  It makes sense to me.  That would be a good perk.

[livecam]

I'll donate one of my old ones. 

[Epoman]

I've been told that if you were a living donor and the kidney you have left fails, you jump to the top of the transplant list to receive a new kidney.

Is this true?  It makes sense to me.  That would be a good perk.

I have heard that too, I wonder if that is true? Can we get confirmation, someone?

[BigSky]

Did I read that right? They would NOT allow your mother to donate because she only had 98% kidney function. That can't be right. A person doesn't even need dialysis until kidney function drops below 10-15%  Please give more details on how they came up with 98%

Yes that is what we were told.  I never really discussed it with the doctors in detail, but my mother did.  She didn't want me on dialysis and told them she still wanted to donate but they refused.    To my understanding the reason they rejected her as a donor was because my kidneys failed and they didn't know what triggered it and even though she had ever so slight impairment they couldn't rule out that she may have kidney failure down the road because of something that may have triggered failure in her like it did me.   We have a pretty big family and no where did anyone have kidney failure or impairment in our history.  Kinda struck me out of the blue.   Lucky me.   So they just didn't want to take the risk.

As to the 98% figure you got me.  Probably the same way they told me I had less than 10% function and would go on dialysis.

[angieskidney]

Did I read that right? They would NOT allow your mother to donate because she only had 98% kidney function. That can't be right. A person doesn't even need dialysis until kidney function drops below 10-15%  Please give more details on how they came up with 98%

Ok if I understand this right ... that is 98% between 2 kidneys and if one was donated then the donor would be in trouble right? My mom can't donate to me because she only has 995-100% kidney function so I understand this.

What?

Ya .. let me explain. My mom has about 49% in one kidney and 51% in the other so if she had donated one to me she would have to be on dialysis down the road.

Does that make sense?

I've been told that if you were a living donor and the kidney you have left fails, you jump to the top of the transplant list to receive a new kidney.

Is this true?  It makes sense to me.  That would be a good perk.

I have heard that too, I wonder if that is true? Can we get confirmation, someone?

I have never heard that before

[sandman]

Did I read that right? They would NOT allow your mother to donate because she only had 98% kidney function. That can't be right. A person doesn't even need dialysis until kidney function drops below 10-15%  Please give more details on how they came up with 98%

Ok if I understand this right ... that is 98% between 2 kidneys and if one was donated then the donor would be in trouble right? My mom can't donate to me because she only has 995-100% kidney function so I understand this.

What?

Ya .. let me explain. My mom has about 49% in one kidney and 51% in the other so if she had donated one to me she would have to be on dialysis down the road.

Does that make sense?

Well, if your referring to 100% total combined capacity, then no, it doesn't make sense.  In that respect, how could anyone have 100% kidney function from each kidney yet still have a total capacity of 100% from both kidneys?  Wouldn't it then be that you would have 200% total kidney function if both were working at 100%?  Think about that one for a minute.

I've been told that if you were a living donor and the kidney you have left fails, you jump to the top of the transplant list to receive a new kidney.

Is this true?  It makes sense to me.  That would be a good perk.

I have heard that too, I wonder if that is true? Can we get confirmation, someone?

I have never heard that before

No, I haven't heard of that one either.

[BigSky]

Well, if your referring to 100% total combined capacity, then no, it doesn't make sense.  In that respect, how could anyone have 100% kidney function from each kidney yet still have a total capacity of 100% from both kidneys?  Wouldn't it then be that you would have 200% total kidney function if both were working at 100%?  Think about that one for a minute.

No it doesn't add up like that.  Both kidneys work to give you a BUN.  Lose one and your BUN doesn't double because you only have one kidney.

Well you have two arms.  If you lose one you still have 100% function of the other arm, not 50% right, the loss of one arm has no affect on the function of the other arm, only your total lifting capacity.

Not all that great at explaining it out to what I mean. Maybe I am looking at it all wrong.

However as many transplants that go on in the US alone,  if it was a concern I think it would be well known by this time.

Kidneys like most organs do not work full tilt all the time.  They only operate as fast or as much as they are needed to operate.  Increase the load they will start working up to their full capacity.

Most people only produce 1-2 liters of urine a day, that is with 2 kidneys!   After my transplant it produced well over 12-15 liters in the first day.  That I would say shows just how amazing 1 kidney can work.  In fact it was producing so fast I couldn't keep up with the fluids (drink half as much as it produced, I was to drink a cup of water every half hour.) and had to be given fluid by IV to keep up with the kidney.

Within a few days my lab values were all back into the normal range including by BUN which is used to determine how the kidney is functioning.

[angieskidney]

that kinda makes sense. But doctors have even said that what one hospital (in London Ontario) said about my mom's kidney function could NOT be right as the doc said they could not have figured out exact percentages like that. The doc thinks that they just didn't want my mom to donate to me. Who knows. I don't know fully .. but at least what you said helps me understand a little bit.

[charee]

We have just completed our 2nd cross match (my wonderful husband and myself) and  I got a call to say he can't be my donor as we are not compatable what a bummer but in some ways its a relief as i was worried for his health down the track. he is very dissappointed.So now I will go on the Transplant list but that is a 5 year wait at least so they tell me, and I suppose the older you get the less likely it is you will get called up. Australia has the lowest organ donation in the world, only 85 people have donated so far this year.

[livecam]

Check with your transplant hospital or organization and see if they will allow a donor swap.  You and your husband would be matched up with another pair of people, one of whom needs a kidney and the other who plans to be a donor.  In that way the other donor if compatible could donate to you while your husband could donate to the other recipient.  My wife and I have incompatible blood types. We were approached about being the first couple to do this in Los Angeles about 7 years ago but it never happened then due to legal ocncerns.  Now that they've ironed out the legal stuff donor swaps happen around the country.

[sandman]

Check with your transplant hospital or organization and see if they will allow a donor swap.  You and your husband would be matched up with another pair of people, one of whom needs a kidney and the other who plans to be a donor.  In that way the other donor if compatible could donate to you while your husband could donate to the other recipient.  My wife and I have incompatible blood types. We were approached about being the first couple to do this in Los Angeles about 7 years ago but it never happened then due to legal concerns.  Now that they've ironed out the legal stuff donor swaps happen around the country.

Oh yeah, I heard about that but I also heard that this procedure is not available in to many places yet.  But that is a good idea though.